Have you considered an online patient community but have hesitated because concerns about misinformation, misbehavior, and safety seem insurmountable?

As we’ve built Mayo Clinic Connect to over 67,000 members, I’m happy to say that with clear guidelines and proven community management practices, we’ve been able to use psychology, social science, and emotionally driven strategies to encourage conversations that improve health outcomes and avoid these commonly feared challenges.

Patients and caregivers know things. They are experts by experience. They commonly share their experiences with others, whether that be in their homes, doctor waiting rooms or online. Predominantly, they discuss the psychosocial aspects of living with a condition, namely aspects often not discussed at length during a clinic consultation.

Hosting patient and family caregiver conversations on Connect affords us the opportunity to observe and learn from these insightful conversations. Connect's value is its conversations and connections.

But let’s first address the elephant in the room: commonly asked questions about misinformation, misbehavior, and safety in online patient communities.

Why and how do you moderate Connect?

Connect is moderated by Mayo Clinic staff dedicated to the community. Learn more about why and how we moderate and who we are. Staff moderators monitor all discussions primarily to ensure that people get connected with someone like them. We keep the community:

safe

supportive

inclusive

useful

respectful

Our moderating team is supported by volunteer mentors — patients and caregivers with lived experience. Mentors are vetted Connect members chosen to be community leaders based on their knowledge, emotional intelligence, compassion, empathy, and for their commitment to the community and Mayo Clinic values.

Once invited to the mentor program, mentors receive training and ongoing coaching. Mentors and moderators have a private group where they can ask questions, get support and learn from each other as well as from the moderators. Additionally, we host six teleconferences per year and an annual conference for additional training and support.

Clearly stated policies make it easy for moderators to modify—and in some cases remove—posts that contravene Terms of Use. Members are warned or removed depending on their intent or the nature of the offense, such as commercial postings, advertisements or impersonations; intentional medical inaccuracies; posts that relate to illegal activity; those that contain disrespectful language, etc. This happens very rarely on Connect. Bots and spammers are usually thwarted through automated security filters.

The plain language Community Guidelines serve as helpful "guard rails" to promote preferred community etiquette and are a useful reference document to keep the community welcoming, safe, respectful and inclusive.

What about people giving medical advice to others?

As stated in the guidelines, we encourage members to share their experiences but advise that they not to tell other members what they should or shouldn’t do. Mentors help model this behavior by using phrases such as “in my experience” or “I know everyone is different, but for me I found it helpful to…”.

Furthermore, Connect’s disclaimer states “All information shared by members on Mayo Clinic Connect ... is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.”

People join online communities not to replace consultations with their medical providers, but to connect with others who have been there.

And misinformation? What do you do about inaccuracies?

Not every statement made by members on Connect is true. However, by allowing people to express what they understand to be correct or perceive to be true enables members, mentors, moderators and, in some cases, providers the opportunity to calibrate the misunderstandings and debunk popularly held myths through conversation.

Rather than removing misguided information, allowing and enabling community members to correct misconceptions and provide balanced, respectful debate can be a very productive bonding opportunity that deepens the sense of community and establishes the value of collective knowledge. Research has demonstrated the course-correcting nature of online communities [Esquivel A et al. 2006], providing they are active, moderated, and respectful behavior is modeled.

How do you build an active, thriving community?

Connect thrives because we apply proven, strategic community management practices. Read this illustrative case study by Rich Millington on how strategic management increased participation on Mayo Clinic Connect by 300+ percent. You’ll note that we didn’t just increase participation, we used psychology, social science and emotionally driven strategies to encourage participation that benefits the members individually and the community as a whole, namely conversations that improve health outcomes.

An active and engaged community not only benefits the members. Connect enables cooperative opportunities for Mayo Clinic clinical and innovation teams and our patients at large. Connect members take part in research and patient experience projects, co-create solutions with Mayo Clinic clinical and patient experience team for improved service delivery, helpe develop patient education materials, and more.

Colleen Young is the Community Director of Mayo Clinic Connect, a virtual community connecting patients with each other and to Mayo Clinic medical expertise. As an internationally recognized expert in building online patient communities that thrive, she frequently speaks about communicating the experience of illness in the digital age and the social web’s impact on participatory medicine, including at Stanford Medicine X and Mayo's Health Care Summit in Australia #MayoInOz. Colleen is a “tenacious connector of patients."

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